Brian Dixon, PhD, MPA, describes the measures taken to protect personal health information in the Indiana Sickle Cell Data Collection dashboard.
Transcript:
All of these data are aggregated and de-identified, so there’s no information on the website about “John Smith” has this disease, and when a number in a particular county, for example, is below five, then we censor it. We just say the number is below five. We don’t tell you that there’s two people with this condition in a particular area. So the data are at a level where it prevents re-identification, and there’s really no way to get down to individual names, let alone very small numbers of people. So we take precautions in order to keep everyone’s health information very secure, but at the same time, we aggregate it to a level that enables it to be useful for population health.
Dr. Dixon explains how frequently the Indiana sickle cell data dashboard will be updated.
Transcript:
Unlike with COVID, where you have an emergent condition and everyone wants to know yesterday’s number today, this is a condition that is a chronic illness, and there’s not a need for daily updates. So updating it a couple times a year is still much faster than all of the other ways that we have had in the past in public health to track the disease. It’s still very, very timely, but it isn’t going to change on a week-to-week basis.
